Hydrocephalus: How bad does it have to get?

Published on May 16, 2020

Waking up with a headache a few days ago is nothing new. One that doesn’t go away, also nothing new. In fact, nothing about that day was different to any other time. I took some Codeine early in the day because I sensed this one would not let up. I figured I’d go for something stronger than Panadol (supermarket brand) and just get rid of it.

Wishful thinking on my part.

After dinner, it still hadn’t subsided and had gotten worse in intensity. Around the back of my head, pulsating gently, almost side to side moving up to the middle until it felt like the pain consumed all of me. I took another Codeine and Ondansetron (for nausea), especially when the intense stomach pain joined the percussion.

About an hour later, I was in full blown pain and seasick with nausea, going back and forth to the toilet. It’s a helpless moment, so familiar to me, yet I started cursing. What or who exactly I was cursing or mad at, I don’t know.

Do you know how good it feels to hug a toilet bowl when you’re feeling isolated and lonely because no one else can help you, or is even aware of what’s happening?

Have you ever had pain that literally felt like it was slamming you from side to side on the ground? I can only imagine what I must have looked like, fighting this invisible menace. Writhing from side to side, on my bed. On the floor, kneeling next to my bed, not able to stand, too weak to lay down and feeling helpless. I begged and pleaded for death to come instead! Images of my family, my children haunting me through the cowardice moment it was.

I texted my cousin to tell him I was in pain, I just had to share it with someone. He came to mind. He started praying for me and texted it back, but I only saw the message the next day.

At one point I lay on my back, balling my eyes out and like so many times before, started questioning God. “Why has my life been full of pain? Why is my body filled with it now? Is this what you want for me? Is this how I’m supposed to go through life?”…

Now I’ve had many moments like these, I’m not perfect and I do question. After a few minutes of silence, I started hearing a song from when I was younger and sang along: “Be still and know that I am God. I am the Lord that healeth thee, I am the one who sets you free…” I grew peaceful, pain slightly subsided, enough to fall asleep. It wasn’t a peaceful night’s sleep though, because the pain wouldn’t go away.

Whether you’re a believer or not, at times like these I don’t think it really matters much. Some may say they don’t believe and don’t pray but I think we all end up questioning the need for our own suffering, regardless. It’s the kind of moment, I’m sure, many would be able to relate to…scary, uncertain and filled with helplessness.

I know the surgeon told me that when I have another episode, I should go to the hospital and would most likely have a lumbar puncture and/or ICP monitoring. In the midst of that pain, I managed to assess myself and evaluate my options. I came to the conclusion that even if this moment felt bad enough, there may be a possibility that it’s not as bad as it should be. What if the Codeine was making the pain in my stomach worse? Something was just familiar to me. I’ve felt like this so many times before. It’s either the medication or this was an opportunity for me to act…

I decided not to do anything just yet and recover instead. That meant lying in bed all day working and somehow managing to get through. Sleeping the rest of the day away as the last of whatever energy I had left, was given to work. It also means the next few days I’ll be lying in bed, resting and riding out the pain as it eases off. While I’m writing this, I’m extremely nauseous, in pain and extremely unsure of my own decision not to go to the hospital…

It has left me wondering though, how bad does it have to get before I make the call. I’m no stranger to these episodes or anything I’ve mentioned above. It’s a De Ja Vu, Hydro roller coaster ride topped with a side of overthinking analysis on my part. I’ve just been through this so many times, being told nothing’s wrong, I’m probably just being cautious. Feeling like I need to be 200% certain that I do in fact need medical attention I.e. brain surgery. I also realise that means having to fight the invisible menace to a point where I may not be so lucky next time…

The one “good” thing which I welcome is the loss of appetite. Since COVID-19, self-isolation and working from home, I’ve developed a very close relationship with food and have the waistline to prove it! Finding the silver lining is sometimes as simple as that because with a condition like Hydrocephalus, they are few and far between!

Related

Published by Skyewaters

I blog about Hydrocephalus to give a voice to the millions (if not billions) of people around the world with this condition NOT disease. As much as these experiences are unique to me and my family, I’m sure others have experienced it too. My aim…to shine a light on it and raise awareness – simple and challenging at the same time but worth it!

10 Comments

Liz

I can relate to what you say here. Such a tough call to know when it’s time to go to the hospital or not. So many times I went and by the time I got a CAT scan the pressure would be relieved. Such a frustrating and often terrifying condition. Thank you for writing this.

Patricia Bitzer

Kudoos to your finding a silver lining during all your pain; that lining being eating less because of your pain during this pandemic, Your super strength and endurance is just amazing to me and all I can offer is prayer for your continued fight. I look forward to the day when sickness and death is a thing of the past. Believe in this promise from God! Revelation 21:4

Anonymous

Itu

I can relate 100%. I get these migraine episodes at least twice in three months, been in and out of hospital for the past four years but still no difference. The pain and nausea (and vomiting) just gets worse every time. I just wish the pain could go away.

Bethany Bacon

I can somewhat relate for sure! It’s not easy at all – especially when we ‘look’ good on the outside but feel like just giving up on the inside because we know how we feel (at least that’s been my experience many times). Yet, through all that, those of us who are Christians know we have hope in Jesus. Does just knowing that always help ‘in the moment(s)’, no. Yet, the truth is, Jesus IS our strength and refuge (among many other things). I am reminded of Psalm 46:1 – God is our refuge and strength, a very present help in trouble.

Oh Skye, we have to endure so much Pain and for what reason? When the rest of the general population gets to live without it? I have been so much better over the last few months but it never seems to leave, I was taken off all my pain meds, all I’m allowed now is extra strength Tylenol because they can’t take that away and Cannabis. I hear your cry’s for help I wish I was able to help you. You know all to well as the rest of us do going to Emergency never seems to do anything until the problem is so obvious they can’t just send you home. How much pain, how many dreadful days and nights will it take? Our NSG’s can’t help us until something is physically broken, yet are we not, broken just looking to be fixed?

Thank you Duncan. A little help would be nice when needed. And yes, I know all too well where an Emergency room visit ends, which is why I don’t go. I remain hopeful though. What other choice do we have?
Thanks for commenting💙